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A Caregivers Guide

Whether you are a sibling, parent or friend of a child who has cancer, caregiving is a difficult and often emotional task. Caregivers cope with learning about cancer and its treatment while simultaneously handling doctor’s appointments, managing symptoms, administering medication, worrying about transportation, maintaining employment and dealing with insurance coverage.

Caregivers are often on the front lines of loss, witnessing a child’s physical, cognitive and emotional changes. Though caregiving is hard work and a struggle, feelings of hope, satisfaction and bonding can also be a part of the experience. Some of these feelings may be obvious, while others are harder to identify or understand.

Memorial Sloan Kettering, a hospital renowned for its world-class cancer care, offers the following tips to help caregivers manage the practical needs and emotional challenges that accompany the rewards of caregiving.

Communicating with the Doctor 

Designate one person to accompany the patient to doctors’ visits, to be the key contact for communicating information about the patient to family members and friends and to contact the doctor to ask questions.

Before each visit, write down key concerns and a list of questions. Speak with other family members to ensure everyone’s concerns are addressed. Here are some early questions you may want to ask:

  • What type of cancer does the patient have?
  • What is the stage of the cancer? Is there any evidence that the cancer has spread?
  • What is the recommended treatment and why? Are there other treatment options?
  • How often will treatment be given and how long will it last?
  • What are the side effects of the treatment? How can they be managed?
  • What are the reasons why I should call your office?
  • At the beginning of the visit, tell the doctor that you have questions to ask. This helps the doctor plan to make time to speak with you.

Managing Symptoms

  • Plan a daily routine and make a list of what needs to be accomplished each day to help you better organize your time. Include the child in planning and decision-making as much as possible.
  • Encourage the child to do as much of his or her own care as possible.
  • Ask for help from family and friends. 
  • Organize medical supplies and equipment you may need in one place.
  • Organize the home to ensure safety. For example, arrange the furniture so there is enough space to walk easily and remove loose rugs to prevent tripping.
  • Know the treatment-related side effects or symptoms that may occur, how to manage them and when to call the doctor’s office.
  • Tell the doctor or nurse if you have any concerns about providing care or if there is care you don’t know how to provide. Ask them to review the information you need to know.
  • Ask for brochures or other written information that you can bring home to use as a reference.
  • Know the person to call for medical problems or concerns.
  • Keep important phone numbers with you and near the phone at home.
  • If you don’t think you can manage the patient’s care at home, ask the doctor, nurse or social worker if home health care is available.

Managing Medications

  • Keep a list of all medications the patient is taking, including over the counter drugs and complementary or alternative therapies, such as vitamins and herbs. Carry this list with you.
  • Know the name of each medication, the dosage, why it is prescribed and when it should be taken.
  • Keep all the medication information the pharmacist gives you in a folder, including medication inserts, which explain how the medicine should be given and possible side effects. Ask the doctor or nurse how these side effects should be managed, if they occur.
  • Use a calendar to record each medication and the time of day it should be taken.
  • Use a pill container with compartments to organize medications, a pill splitter if you must cut tablets in half, or a measuring device, such as a spoon or dropper, for giving liquid medications.
  • Check the medication supply a week before it should be refilled to avoid running out unexpectedly. Certain medications, like those that control pain, cannot be refilled without a new prescription, and only a small supply can be called into the pharmacy by phone. Bring a list of medications for which you will need a new prescription to each doctor’s visit.
  • Give medications exactly as prescribed. Have the patient take all prescribed doses, even if he or she is feeling better.
  • When the patient leaves home, even for a doctor’s visit, bring medication(s) with you to avoid missing a dose if there are unexpected delays.

Emotional Support

  • Patients may have a host of feelings during their cancer experience, and helping patients find ways to cope with the emotional and spiritual side of cancer is another important role caregivers encounter.
  • Sometimes patients direct their emotions, including their anger about being sick, toward the caregiver. This may be hurtful to you, but it may help if you understand the source of these behaviors.
  • Try to keep daily life as normal as possible. At the end of each day, reflect on how things went and identify positive experiences.
  • Plan activities unrelated to the patient’s illness. Consider things you enjoy doing together, like listening to music, watching television, seeing a movie or shopping. If the patient enjoys being with family and friends, make opportunities for socializing with them.
  • Encourage the child to be as physically active as possible. Exercise, including walking, may provide an emotional boost.
  • Encourage the child to discuss his or her concerns openly. Ask the patient not “how” but “what” are you feeling? Be a sounding board; listen without trying to make everything better. Let the child know that it is okay to feel sad and frustrated at times.
  • Physical expressions of affection, like hugging, touching and holding hands, can be very comforting.
  • Recognize that anxiety and depression are common among cancer patients. However, if they last more than two weeks or cause the patient significant distress, call the doctor or nurse to discuss your concerns.

Get important tips on caring for the caregiver »

Find helpful information in “10 Things You Can Do” to help a family »

Learn about the key members of the oncology team »

Source: Memorial Sloan Kettering Hospital, “Help for Caregivers, Friends & Family” Guide

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While Justin lies in his hospital bed, an oxygen mask on his face, his parents stand by, his step mom leaning against his father, looking distraught
Justin Ashcraft's stepmom and dad, Susan and Dale, watch over him in the hospital